The good news is that I finally have my appointments schedued here in WA. The Patient Care Specialist at UW called on Friday before I left and set everything up. She was incredibly nice and friendly and shared my frustrations about getting anyone at Penn to cooperate about the documents transfer. Her exact words, which I find incredibly amusing were" trying to get the hospitals on the East coast to cooperate is like being a crocodile's dentist!" In fact, there is still one outstanding paper that Penn is resisting my request for and so I will spend another day on the phone with them today. We still haven't heard about the genetic marker and we haven't received the paper copies of the reports that we paid for. But, despite these bumps we are moving forward!
My first appointment with my neuro-oncologist is Wednesday, February 11th at 3pm. They said to expect at least 1.5 hours. After that appointment, on the same day, I will have an appointment with a radio-oncologist who will focus on the radiation treatments I will need. I am hopeful that after the 11th I will have a much better sense of what the treatment will look like. Many people have shared positive experiences with chemotherapy in pill form which I will be sure to ask about. In addition, the neurosurgeon that my neurosurgeon at Penn recommended is in the same practice as these two doctors and the patient care specialist said that all of my information will be easy to move betweeen these doctors and she will be in charge of my case. This was a huge relief to me. It feels like someone here has a sense of what is going on and she now knows my case. She also shared that though we were told that an MRI needs to happen at 1 month (surgery was January 2nd), that usually the doctors don't order them until at least 6 weeks because the images are clearer as the swelling subsides.
I am grateful for the extra week I spent at home because I got to see many people one more time and spend a little more time with my family. Packing was a disaster because I was trying to fit in items from Christmas, the kids things, Paul's things, my things, presents I received at the hospital and afterward, hundreds of get well cards (that I cherish!), things I bought and more... I had to borrow a huge suitcase from Kelsey and somehow I managed to get most of it in.
On Friday before I left, Olivia posted on Facebook how great it has been to live in a commune for the past month. My gratitude for Kelsey's hospitality is unending. She allowed people to come freely through her home, hosted a luncheon, allowed family and friends to stay or even sleep over and just let us live as if we were home. Olivia stayed over almost every night and the two of them encouraged me, made me laugh and cry, and transported me to a place that was a beautiful blend of middle school sleepovers, church camp weekends, college dorm all night chats and reminded me again of what it means to be a part of God's great family. To be cared for and to be known, not because I have done anything or deserve anything but because I am loved and beloved.
I told Olivia that my instinct was to comment on her Facebook post that it was the best month ever. I fully understand that this statement is filppant and inappropriate and that it was a very difficult time for my family and for my health, but I am so aware that the times when we get to laugh and smile and feel joyful friendship uninterrupted as adults are so rare. The ability to relax over an unrushed pot of coffee with friends every morning for a month is a gift that most people don't have the privilege to experience. In fact, if I were to list the meaningful moments over this Christmas season I don't think I could list them all and so I am grateful for extended visits and extra time to revel in the glory of holy friends and caring family. (oh and girl scout cookies... good timing on my part!!!!)
One of the last visitors I had asked about how I was feeling about coming back to Seattle. I shared that I was excited for the mild temperatures and to walk to the store again and to sleep in my bed and to have a routine and a family life. But I shared with her that though I am growing to love Seattle, in PA, I feel known. Many people have known me for my whole life. I have quite a few friends I still see from elementary, middle and high school on a regular basis. They know who I was a long time ago and they know me now and that familiarity is comforting. And to feel close with people takes time.... close relationships are not meant to be rushed.
And yet... as soon as I say something, as soon as I give thoughts permanence in spoken word I am reminded that God is always two steps ahead and working for my future and for my benefit and that God is for me even when I don't know it or see it. Because I landed Saturday evening very late and as I entered worship Sunday morning a community of people I have only known for three months gently embraced me with sweet smiles, promises of prayer, hugs, love and the reminder that I am known. Not always but the people I pass on the street or even sit next to in worship, but known by my Creator who knows what I need. And so, my limited understanding of being known in Seattle was wiped away. My fridge was full, my mailbox overflowing, my heart reminded again that it's not only on my left side I can't see, it's the million piece puzzle that I only have found the corners to. I left worship so full of joy. It was super bowl Sunday, Seattle was full of excitement. The church joked that the liturgical colors were blue and green and a dad was spray painting kids hair on the coffee bar and everyone who passed me knew me somehow and reminded me they were praying for me.
The experience was the same at school. I went Monday to pick the kids up and I was greeted with tears and joy and so many hugs and offers to help in any and every way and again as a stranger in a new city I heard God whispering in my ear "you are known."
I continue to feel about the same healthwise. Generally I feel like myself. My conversations and mannerisms don't really feel different to me. I do catch myself asking some of the same questions a few times which is partially still part of the recovery and partiallly from the area of the brain where my tumor was that affects the ability to define specifics about situations and items. I'm still walking into things on the left side and still noticing depth perception issues. In the airport I had to stand on two painted feet on the ground in the scanner and where the feet were painted I couldn't see them. The lovely TSA employees in Philly were not patient or amused. Large spaces, new places, loud noises and crowds are challenging for me, but given a few minutes and a chance to observe I can usually figure out how to function. I have found that I am much more tired right now which I believe is from travelling and my desire to keep up with the kids here. I'm hopeful that in a few weeks I'll feel stronger and as the weather warms I'll be right there along the walking paths overlooking the Elliot Bay. And though noises and crowds and new spaces are challenging, those are also some of my favorite things... parties and people and gatherings, and so I won't avoid those things, instead I'll just be careful to listen to my body and rest and retreat as I need to.
I've been having a little bit of enjoyment poking fun at my blunders... having some good brain jokes... it's funny that you never notice the things you say until it hits home. How many times have I joked about being brain dead or a brain surgeon or other "head" jokes. I still take no offense to these things but I just notice them. In fact, as I was continuing to lean on verses of hope in the scriptures I found myself laughing out loud at 1 Thes 5 when it says that God gives us a helmet of hope and salvation. Olivia and Kelsey joked that I needed to put on my helmet every time I walked into something. And of course, the mental image of God protecting my skull and my brain is comforting and a realistic thought that brings together the physical and spirital dimensions of my healing.
I enjoyed a great brunch at Penn's Table, a West Chester staple, with Olivia and Kelsey before I headed to the airport on Saturday. It was so centering for me because it was just about a year ago that I first asked them to join me for a meal at that very diner to dream and to vision with me about ministry. It seems impossible to me that I've only known them a year and yet they have been my nurses, my friends, my companions, my prayer warriors, my friends and my family. And so through the headaches and the confusion and the improperly placed left side of doorways and the frustrating phone calls and the need for naps and the joy I will cling to the people that God has placed in my life that I didn't know I needed and I will be reminded that through them and when I am with many and when I am alone that every hair on my grey haired head and every moment of this journey is known and perfectly placed.
Please pray next Wednesday for peace during my appointment. Pray that I will have the wisdom to listen to my body and rest when I need to. Pray that there is ease between us and these new doctors. Pray that I will learn to ask for the help that I need because it is HARD to do (I'm a beautiful mix of hyper self sufficiency and obstinacy. Pray that the tumor will not return. Pray that I will continue to find joy every day. Thank you for being there for my family and I while I was home and thank you for your kind care and support as we begin again. We all covet and desperately need your prayers in so many ways and humbly, perhaps for the first time in my life, I continue to ask you to lift me up in prayer.
We are with you in every possible way!
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